Getting sleepy...

I've discovered this past month that happiness too often rests upon one circumstance in life being right. I can't tell you how much clicked for me during that month when I felt amazing. I was interacting with people, exercising, studying, working, and reading. As a consequence, I felt happy even though I knew so much of my future was uncertain. And in the back of my mind while I knew this feeling might not last, I also knew that it was resting completely on the promise of Remicade and whether or not I would continue to respond to it.

That did frighten me a bit. I am a complete Type A personality and the idea of not having control of something angers me more than you can know. Over the years I have become a slave to Crohn's and being at its mercy every time it has come back to rear its ugly head again. But I've also taken comfort in those moments of clarity when I do have control and can refocus my energy on being me again and doing things for myself.

This past week, especially, has been very frustrating. There are plans I was not able to execute and while I should have known better than to think I would be able to carry them out, it was still a let down. When it's time to carry them out and people are relying on you, it just reminds you of what you can't do, and the anger just boils even more. I've been devestated this week at what I haven't been able to do. Once you get a little taste of a little bit of productivity, it's hard to go back.

I guess it's the yo-yoing that kills me. Never knowing what's next. Never having someone around who understands. The worst part, especially, are my relationships with people. No one can ever understand what it is like to have absolutely no control over, not one, but two parts of your body that are producing shit whenever the hell they feel like it. And then people expect you to be able to continue the activities you had planned, or to go out and be "fun Ellen" when they don't understand that the whole time you are out there is not one thing you can think about except Crohn's. It's not like I'm going out to a party or a bar and all I gotta do is suck up some fatigue or a headache. There's a lot more I need to overcome and a lot more that can go wrong, with absolutely no warning. And that's pretty fucking scary.

Just feeling very alone at the moment in this. I know there are people who support me but no one completely gets it. No one. And while they can't be blamed for that, it's hard to be genuine when so much of who you are is something that no one around you understands.

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